Hannah and Simon Cox were warned to brace themselves for the possibility their unborn child may die after a scan showed major organs growing outside the baby's body.
The Sunshine Coast couple were told three months into the pregnancy their baby had what is known medically as a giant omphalocele – a serious birth defect resulting in key organs, including the liver, growing into the umbilical cord.
About one in five babies with the condition do not survive.
But 12 months after being warned their baby's condition may not be "compatible with life", the Coxes are about to celebrate their first Christmas with the tiny little girl they describe as their "miracle".
Elsie Kathleen Cox was born at the Mater Mothers' Hospital in South Brisbane at 12:36pm on May 30, weighing 2,564 grams.
Her parents chose the name Elsie not only because it is a family name on her dad's side – both her great grandmother and great-great grandmother were called Elsie.
"Elsie means God is perfection," Mrs Cox said.
"We just like the meaning because the whole time we just clung to God and knew that he was the author of the story.
"We needed to go with him and let him guide and help her and we'll just do everything we could.
"We have a church community, and we have a Christian faith. It doesn't make anything easy, but it definitely is a place of refuge and help."
They also put their faith in the expertise of the Mater's internationally recognised maternal foetal medicine centre, which provides expert assessment and treatment during the most complex of pregnancies.
The 'sweet part'
Mrs Cox described her pregnancy as "very overwhelming and very scary at times".
The couple was told Elsie may have problems with her lungs, heart and spine, as well as having her liver, stomach and intestines growing outside her body.
"It was a rollercoaster," Mrs Cox said.
"It was that constant battle of trying to not get too anxious, but also not too excited, because you have this fear that these things could happen that they keep telling you could go wrong.
"However, we were still trying to cherish the pregnancy and not let it be completely terrifying and trying to celebrate the good parts and trying to take it day by day instead of taking a bigger picture.
"I was very determined to continue with the pregnancy and learn about Elsie's condition."
Mrs Cox was awake for her daughter's delivery by caesarean section at 39 weeks gestation, trying to treasure the moment of her firstborn entering the world and excited to finally meet her but also anxious about what may lay ahead.
Elsie's delivery had an extra layer of complexity with her having to be delivered much more carefully than usual, to protect the membrane surrounding the external organs.
"If that was to rupture, that would be even more high risk," her 27-year-old mother said.
"Those organs are obviously major organs that you're dealing with."
Mater maternal foetal medicine fellow James Aridas, who performed the caesarean, said he had to make a larger cut than usual to ensure "we had enough space to deliver the baby with as little trauma as possible".
"There's potential for complications at any point in time during the pregnancy. There's a higher risk for them at the time of delivery as well," Dr Aridas said.
"With a baby like this you're making sure you're not putting any pressure on that abdomen or the umbilical cord.
"This was definitely the biggest omphalocele I have seen. It was a very delicate, challenging delivery. But everything went to plan."
Mrs Cox heard a faint cry and was given a glimpse of Elsie before she was taken to the resuscitation room, where she was placed on a ventilator, and then on to the neonatal intensive care unit (NICU) accompanied by Simon, her 31-year-old dad.
"Hearing her cry was a sweet part of the process," Mrs Cox said.
"I definitely held onto that."
About two hours after the birth, the new mum was wheeled in her hospital bed to the NICU to be with her daughter.
"I remember going in and looking around to see her, wondering which baby is mine? And there was a team of people surrounding this one baby and I was like: 'I hope that's not my baby'," Mrs Cox recalled.
"And there she was behind all the people trying to work on her.
"I wasn't able to get really close. I could just reach the fingers of her hand from the bed."
'Quite a high mortality rate'
Elsie was a few days old before her mum was finally able to hold her in her arms for the first time.
She had so many wires, tubes and cords attached to her, it took "four or five" nurses to lift and move her safely so Mrs Cox could cradle her daughter.
By that stage, surgeons had decided against operating on the omphalocele, deeming Elsie "too sick".
They opted instead to cover the omphalocele with a silver dressing to promote skin growth and to wrap it in bandages.
"It was tricky," Mrs Cox recalled.
"Having her organs on the outside meant that she had a big bulge from her stomach area.
"You couldn't really press her to your chest. You're holding her in a cradle position. We couldn't really hold her close, which was hard because it's not as nice and intimate as you would like but obviously, all we wanted to do was just what we could and hold her how we could."
Mater director of neonatology Pita Birch said of the 10,500 babies born at the Mater Mothers' Hospital annually, one or two had a giant omphalocele.
He said omphaloceles occurred in about one in 4,200 births.
However, giant omphaloceles – those where the diameter of the sac is larger than 5 centimetre – were much rarer.
"About 20 to 25 per cent of babies with a giant omphalocele will actually die from it," Dr Birch said.
"It's actually got quite a high mortality rate, especially with one as big as hers.
"I thought she'd be a challenge because we had to put a breathing tube down and put her on a ventilator machine. She was on that for a couple of days.
"She was pretty sick. But once she improved after two or three days, she got better pretty quickly and did really well."
Elsie continues to surprise
Elsie spent two months in the Mater and another few weeks at the Queensland Children's Hospital before being allowed home to Burnside, on the Sunshine Coast, in August – much quicker than her parents expected.
With gravity, and as she has grown, the organs have retreated back into her abdomen, and skin has grown over the omphalocele.
Mrs Cox said only a tiny lump remained.
Six-month-old Elsie will eventually require surgery to "push back that last bit of intestine" but is progressing well.
"She's very strong, always surprising us and definitely doesn't let much get to her," Mrs Cox said.
"She's pretty happy."
Elsie is still on 24/7 oxygen therapy to assist with her breathing and supplemental feeding to help her gain weight but is otherwise breastfeeding and "loves eating solids".
She will require ongoing, regular visits to Queensland Children's Hospital specialists, but her parents are looking towards her future with "hope".
"She's definitely a miracle," Mrs Cox said.
"We've been told that many times in the medical world by different specialists."
